Monday, August 28, 2006

August 28, 2006 - PET/CT Fusion Scan

Today, just back from my vacation in the north country, I go for my first-ever PET/CT fusion scan. This is my three-month follow-up test, to see if there are any active cancer cells detectable in my body.

While this is, technically, the first time I’ve had this particular type of scan, it’s not really all that new to me. I’ve had CT scans before, and I’ve had PET scans before. This machine is a hybrid, that does both at once. The chief advantage is that I don’t have to go for two separate scans. (The last time I had a PET scan, I had to first have a CT scan, then wait a week or so for the films and narrative report to come back, before schlepping both of these to over the PET scan place.)

My destination today is Atlantic Medical Imaging, a spanking-new facility in nearby Wall Township. It’s the latest branch of a large radiological-imaging company headquartered in the Atlantic City area. Ordinarily, I would patronize our local hospital for this kind of service, but the fusion scan isn’t available anyplace else in this area.

The waiting room, with its designer furniture and huge flat-screen TV on the wall, looks like some posh health club. As they lead me down the hall (after filling out the obligatory paperwork), we pass an artificial waterfall. They’ve spared no expense in building this place, I think to myself.

Pat, the technician, ushers me into a private room with a radioactive symbol on the door, and seats me in a large lounge chair. After asking some preliminary questions and starting an IV line, she leaves for a moment, then returns with what looks like a little metal lunchbox. I can tell from the way she hefts it onto the counter that it’s very heavy. It’s lined with lead, and contains the radioactive source material that will shortly be injected into my veins. Opening the box, Pat removes a shiny, stainless-steel-clad cylinder about four inches long and two inches wide. It, too, looks heavy – probably lead-sheathed, underneath the stainless steel. Extending from one end is a plastic plunger, such as you’d ordinarily see on a hypodermic syringe. Pat lines up one end of the cylinder with the plastic tube hanging from the inside of my right elbow, presses the plunger on the other end, and that’s that. I’m to sit quietly for forty-five minutes, she instructs me, while the radioactive glucose solution works its way through my body.

I feel no different, as all this is going on. In fact, I rather enjoy the quiet time, with a book on my lap. As I relax, I’m also aware that, if there are cancerous cells still in my body, they’re slurping up the radioactive glucose solution. Rapidly-metabolizing cancer cells are ravenous, that way. That’s what enables the PET scanner to find them: it picks up the radioactive material that’s chemically bonded to the glucose.

Forty-five minutes later, Pat returns and ushers me into the scanner room. The machine looks much like a regular CT scan or PET scan machine, except that the circular opening (the inside of the donut) is two to three times deeper. She and another technician lay me down on the sliding table, position my legs and head comfortably, then direct me to put my arms at my sides. Then, they wrap up my entire mid-section, arms and all, inside a large vinyl strap with velcro closures. It makes me feel like a mummy – although, I have to say, the position is easier to endure than the hands-over-the-head posture of my previous PET scans, which I found quite uncomfortable. The scan itself probably takes 30 minutes or so, but the time goes more quickly than before (probably because I’m in a more comfortable position).

Once the PET scan is over, another team comes in to conduct a CT scan of my chest (this is for my pulmonologist, Dr. De La Luz, who’s following up on Dr. Lerner’s referral, concerning a small spot in one lung which showed up on the last CT scan). A member of the CT-scan team tells me they would ordinarily do this in a different room, but because the air conditioning in that room is broken down, they will use the fusion machine.

For this one, they do want my arms up over my head. Immediately before the scan begins, the technicians retreat behind a plate glass window. By remote control, they inject a contrast solution into the IV tube in my right arm. I can feel a sort of popping sensation coming from the plastic tube. Something has evidently gone wrong with the IV line. The technicians interrupt the scan, and hurriedly mop up some solution that has spilled from the tube onto the machine. (Is this hazardous waste, I wonder? They do seem very concerned to get every little bit of it mopped up.) Apologizing for the inconvenience, they insert a new IV line in my left arm, and go through the entire process again, completing it this time.

Afterwards, I phone over to the file room at Ocean Medical Center, telling them I’ll be driving over to reclaim my previous CT Scan and PET scan films. The radiologist at Atlantic Medical Imaging, I’ve been told, will need to compare my new results with the old ones. The OMC people give me a bit of a scare, when they tell me their computer says the films are still checked out to me.

“No, they’re not," I tell them. "I returned them.”

“Let me check the files in the basement,” the clerk tells me. A few minutes later she phones me back. Yes, the films are all there. Someone evidently forgot to note them in the computer as returned.

It’s one more example of how important it is to be proactive about one’s own health care. I make a mental note: my test results are now divided between two places - the CT Scan and PET Scan films are at Atlantic Medical Imaging, and everything else is still at Ocean Medical. I’ve got to keep track of these things. I’ve learned to trust no one else to do it for me.

Monday, August 21, 2006

August 21, 2006 - Becalmed

The other day, I heard a quotation from Herman Melville's Moby-Dick on a National Public Radio broadcast. It resonated with me, so when I got to an internet-connected computer today, I searched for it in an online version of that great novel.

I remember, from when I read Moby-Dick a few years back, how Melville intersperses philosophy with his narrative. This passage is an example of that. He's reflecting on the experience of sitting in a whale-boat, before the harpoon has been hurled, setting its barb in the whale's body. Once the harpoon-thrower does his work, the whale will instantly react, pulling the small boat and its occupants on a wild and deadly journey. The sailor is looking down at the coil of line in the bottom of the boat. In a matter of seconds, he knows it will unwind, becoming completely taut. But for now, there is a deceptive calm...

" the profound calm which only apparently precedes and prophesies of the storm, is perhaps more awful than the storm itself; for, indeed, the calm is but the wrapper and envelope of the storm; and contains it in itself, as the seemingly harmless rifle holds the fatal powder, and the ball, and the explosion; so the graceful repose of the line, as it silently serpentines about the oarsmen before being brought into actual play - this is a thing which carries more of true terror than any other aspect of this dangerous affair. But why say more? All men live enveloped in whale-lines. All are born with halters round their necks; but it is only when caught in the swift, sudden turn of death, that mortals realize the silent, subtle, everpresent perils of life. And if you be a philosopher, though seated in the whale-boat, you would not at heart feel one whit more of terror, than though seated before your evening fire with a poker, and not a harpoon, by your side."

[Moby-Dick, chapter 60.]

Melville's right - we all live "enveloped in whale-lines." In this modern era, when our ever-expanding medical knowledge is beating back so many deadly diseases, some of us may be forgiven for imagining that death is not a possibility for us - or, at least, so distant a possibility that we bear it no mind. As a cancer survivor, I can no longer think that way. Things are relatively calm in my life, right now. The boat is bobbing on a peaceful sea. The harpoon-line is benignly coiled at my feet.

Yet, I'm aware that circumstances can change very quickly. A week from today, I'll go for my combined CT Scan and PET Scan. Things will probably turn out just fine. But, you never know...

Saturday, August 19, 2006

August 19, 2006 - Return of the Beard?

I'm sitting in the cafe of a Borders bookstore in Plattsburgh, New York, as I'm writing this. it's the closest place to our "camp" (vacation cabin) in Jay, New York, where I can get Internet access with my laptop (for a small fee to T-Mobile, of course).

I'm about three weeks into my vacation. Claire is here with me, and we've had a wonderful time of relaxing together, and just BEING.

I've been growing my beard back. After a couple of weeks of not shaving, it's just beginning to look like the beard is intentional - as opposed to my just being lazy, and walking around unshaven.

Except for a couple of very brief periods, I've had a beard since my freshman year of college. In those days (late 1970s), it was a common enough thing to do, for young men of my generation. Keeping the beard all those years was not so much a statement of wistful longing for the counterculture, for me, as simply being unwilling to change. I had gotten used to it, and when I looked at myself in the bathroom mirror, the beard was what I expected to see.

When I cut it off last winter, as the hair-loss from my chemotherapy treatments was beginning in earnest, I looked like a different person. My kids barely recognized me. Many people told me they thought I looked about ten years younger. For the first time, I could see a strong family resemblance between myself and my brother, Jim, and with our late father (I always thought I looked like my younger brother, Dave, even with the beard).

Once the treatments were ended, I was of a divided mind as to what to do about the beard (and still am). Claire and the kids have been unanimous in saying I ought to grow it back. Most other people who have weighed in on the subject say I should keep it off. Many folks from the church - perhaps because they're more conservative by nature, or perhaps because they just think I look better without it - have been gently lobbying me to remain clean-shaven.

My growing it back in, right now, is something of an experiment. I'm up here in the north woods, so I can take the time to grow it in a bit, and see what it looks like. So far, the early signs are that it will come back whiter than before (the same is true of the hair on my head, but most people who have seen me know that already).

Another reason why I'm of a divided mind about growing the beard back in is a bit harder to put into words. During my chemo treatments, as I was walking around hairless, I felt like I was visibly displaying a sign of what I was going through. (I would not ordinarily have chosen to be so public about a medical matter, but I really didn't have a choice.) Don't get me wrong - I would much rather have kept my hair - but since hair loss was inevitable, I was willing enough to go through with it. It was what it was.

I feel like having cancer has changed me, somehow. I'm not sure I can define how, exactly - I just feel different. My new, clean-shaven self has been symbolic, somehow, of that change. Growing my beard back in, exactly as it was before, makes me feel almost like I'm denying the reality of what I have been going through.

I don't want to do that. I don't want to turn back the clock. I want to move forward, as the person I am - which includes being a cancer survivor.

Is the beard truly symbolic of that resolve? Or is it irrelevant?

Who knows what I'll ultimately decide? Stay tuned...

August 18, 2006 - NHL Webcast

I've received the following e-mail message from a reader of this blog, and am passing it along, in case this sort of online educational resource is useful to other blog readers...

My name is Rachel Brand, and I found your blog while searching for online Lymphoma sites. I’m currently working to promote an August 23rd webcast for NHL patients called “Treatment Options for NHL.” This interactive webcast will feature a question-and-answer session from a NHL expert (Dr. John P. Leonard) and a former patient and NHL survivor, Betsy DeParry.

You can register for this program HERE:

Tuesday, August 15, 2006

August 15, 2006 - Farewell To a Friend

(This is one of the vacation blog entries I said I'd be sending... no frills, no pictures, posted from the computer in the local public library.)

I've just dropped a sympathy card into the mailbox for Bill, a retired minister in our presbytery. I received news, via e-mail, of the death of Dottie, his wife - also a retired minister in our presbytery.

Dottie and I had known each other a long time. Back in my days of working as a seminary administrator (Director of Admissions and Assistant Dean at the University of Dubuque Theological Seminary), she had been a colleague, directing the Field Education Program at Princeton Seminary. Then - after my return to parish ministry - when I was chairing the Committee on Preparation for Ministry of Monmouth Presbytery, Dottie served very ably as a member of that committee. She subsequently retired from her seminary-administrator job (a couple of times, as I recall).

Somewhere along the line, she married Bill, a widowed retired minister whom I've also known for a long time. He and I served together on the staff of the Presbyterian Church of Toms River, where I was an associate pastor in the early 1980s, and where he - then, recently retired - was working part-time doing pastoral visitation.

More recently, Dottie came into my life in another capacity - as a fellow cancer survivor. She had been battling ovarian cancer in recent years. I wrote about her in a blog entry a few months back, after she showed up unexpectedly during one of my chemo sessions, and sat with me for a while (she went to the same medical group for her treatments, and just happened to be there for a doctor's appointment on the day of my treatment).

Many months before, we had run into each other at the outpatient-testing sign-in area at Ocean Medical Center, as I'd been nervously arranging for the CT scan that would confirm that I have lymphoma. Back then, I wasn't willing to tell Dottie why I was there, and she was wise enough not to press it.

Dottie was one of those people who imparted a great deal of strength to those around her. I felt that inner strength on the day she stopped by during my chemo treatment - even though I knew she was engaged, at the time, in the fight of her life. She ministered to me that day. She prayed with me. And for those gifts, I was grateful.

Now, Dottie has moved on to the next step in the journey that is life. Now, her life "is hidden with Christ in God" (Colossians 3:3). Claire and I are too far away, on vacation in the northern Adirondacks of New York, to make the trip down for the memorial service this weekend. So, a sympathy card is about all I can do for Bill right now.

That, and to remember Dottie fondly, and with respect. She and I were fellow members of the Cancer Underground. Being members of that exclusive group means that - more than in most communities - we must be ready, from time to time, to say goodbye.

Saturday, August 05, 2006

August 5, 2006 - On Vacation... Almost

Today we're packing to go away on vacation. Claire and I will have two weeks or so at our cabin in the Adirondacks, near Jay, New York. Then, I'll have an extra week or so in the north woods, on my own, after Claire's vacation time has run out.

I'll try to post some blog entries while we're away, but they're likely to be few and far between, and probably won't include pictures. (The only internet access I have up there is in the local public library, so I'll be limited in what I can do.)

Our departure has already been pushed back a bit. I've been dealing with a huge backlog of accumulated tasks, many of them related to medical bills. As I sort through the dozens of window envelopes, I'm impressed, once again, by how weighty an administrative load our health-care-financing system puts on patients. Even the simplest lab test generates three or four envelopes – some from the medical provider, others from the insurance company. And that's when things are going well. When mistakes happen – which they frequently do, given the complexity of the system, and the variety of accounting systems being used – it can take a year or more to resolve the situation. Meanwhile, those window envelopes just keep piling up.

Cancer has a chaotic effect on the cells of the human body, but it also has a chaotic effect on patients' finances - and therefore, indirectly, on their quality of life. It would be much more therapeutic for me to be sitting on the front porch of our little house, right now, surrounded by birch trees. Instead, I'm sitting at my desk at teh manse, doing one of my least favorite things in the world: reconciling columns of numbers. I'm supposed to be on vacation, but I feel like I've got a temporary job instead: medical-insurance financial secretary.

Trying to figure out insurance reimbursements from a major illness does seem, at times, like a full-time job. It requires persistence, vigilance and buckets of patience.

The end is in sight, though. I can see my desk-top, at last. Soon it will be time to start putting the clothes in the suitcase.

August 4, 2006 - Returning Hair

My hair is definitely coming back, these days. I’m starting to look like a person with a very short haircut, rather than someone who’s had his head shaved. I never did lose all my hair, nor did I lose my eyebrows or eyelashes. That makes me something of a rarity among CHOP chemo veterans.

At first, it looked like my hair was going to come back white. Now, it seems to be getting a bit darker. Whether it will ever return to the predominantly dark-brown hue of my pre-chemo days, though, remains to be seen.

“Gray hair is a crown of glory;
it is gained in a righteous life.”

- Proverbs 16:31

Today, Claire remarks to me, with glee, that my hair is sticking up in the back (where my head has been resting against a pillow). Another one of those little milestones on the road to recovery.

I still haven’t started carrying a comb around with me yet, but the day is coming...

Wednesday, August 02, 2006

August 1, 2006 - Renewal

Today, going through some mail, I come across a subscription-renewal notice for a preaching journal. It offers me three options: a one-year, a two-year or a three-year subscription. The longer the subscription period, the cheaper the per-issue cost.

Looking over that notice takes me back to a time, about six months ago, when I was considering a similar subscription-renewal notice, for another professional journal. I distinctly remember hesitating, at the time, at the thought of the three-year renewal. I’ve got cancer, I said to myself. I’m receiving chemotherapy. Sure, the doctor says my chances of going into remission are pretty good, but what if I’m in the unlucky percentage? Can I be sure I’ll still be alive, three years from now? I wrote a check for a one-year subscription.

Now, as I hold today’s renewal notice in my hand, I feel differently. I’m in remission. The next three years look brighter, clearer.

I check the box for “three-year subscription,” and write a check for the necessary amount.

As I lick the stamp, it feels like a victory.